Topomax for seizure?

General
1

Does anyone use Topomax for seizure ? My daughter is using Keppra now but she hates it, we are thinking asking the doctor to change her to something else and we were thinking of Topomax. Any of you any experience with it? Thanks

2

Hi Maria. I did a search for you…
http://www.avmsurvivors.org/main/search/search?q=Topamax
Each person’s body is different so some members’s tolerate certain drugs differently.

3

Thanks Barbara, you are the best with the research :slight_smile:

4

Barbara is the BEST researcher on this Network! Thank goodness we have you Barb!

5

Hi Maria!
My doctor did prescribe me Topomax for seizures. I had one seizure and that's how my AVM was discovered. So he put me on Topomax vs Keppra for various reasons that we discussed. I was on Topomax for nearly two years. There were some side effects, some weight loss, which did plateau, but it was noticable. It also made me somewhat sleepy, and it did make me a tad bit moody. I also shed more hair in the shower and in my hairbrush than usual. Those are all listed as side effects, but they're also the things that I noticed. None of them were deal breakers for me, however. Topomax also helped with my daily headaches; both before and after my craniotomy. Overall, given the choice again, I would still choose Topomax.

I hope some of this has been helpful to you. Good luck to your daughter!

6

I dont use topomax for seizure I have been on it for a month for headaches. I like keppra a lot better as with the topomax I have a lot of numbness and tingling in my feet and hands. This happens up to 10 times a day and last up to five mins at a time. I did have the loss of appetite which went away quickly. As side effects are different for everyone maybe keppra is not good for your daughter but topomax might be a good match for her. Best of luck I hope she finds a medicine that is a good fit for her!!!! I went through a few before I finally decided keppra a worth sticking with.

7

Thanks, Sonia, for the information. If I may ask you, how much mg. are you taking now after the surgery, I assume for prevention of seizures, of the Topomax?

8

I was on 100 mg per day, 50mg in morning & 50 at night, both before my craniotomy and after. About a year after my surgery my neurologist backed me off of it, but keeps me on 25mg per day for headaches.

I had forgotten about the tingling in fingers & toes. That did happen to me, but it only lasted about a week, then my body adjusted.

9

Thanks Sonia, this helps me a great deal ! :slight_smile:

10

Thanks so much for the input :slight_smile:

11

Topomax gave me some strange side effects. Twitching, muscle spasm. numbness of toes,stuttering, dizziness almost all day and headaches. Now Lyrica worked well. Side effect weight gain and some mild dizziness. Each med works differently to each person. Good Luck there....

12

Thanks, Allan. That is interesting, this is exactly the same problem Sandy has with the Keppra but worse. Violent twitching, muscle spasms, blurred vision, the worse headaches you can think of. Dizziness. You are right, each meds works ddifferent with each person. I take Topamax for my back, for nerve damage, and I am doing great with it. May I ask how much mg. were you taking ? was it for seizures? Thanks for the info.

13

Hi Maria,
Weird. I had these exact same side effect for Topomax. I was taking only 250mg twice a day as Anti seizure med. Lyrica is best for me so far.

14

Thank you, Allan, this helps. Funny, I was given Lyrica first for my back, and I had all the bad side effects on that, don't even mention the weight gain. Ugh !! So I'm thinking Sandy may do well on the Topamax since we are kind of alike, who knows. We will see her doctor this monday. Thanks again for the info, Allan. :)

15

I was on Topomax last year for about three months after I had my stroke due to 5 blood clots. I slept a great deal and even had to be woken up to take my next dosage. Sorry I dont recall my dosage but I know I was taking it three times a day. It did help with the head pain but I am also a light weight when it comes to drugs. They switched me to gabapentin which works better for me with less sleep side effects. I also take magnesium for the head pain as well. I was diagnosed later last year with a fistula which I had my first angio/emblo with glue and onyx just 13 days ago. Good luck to your daughter hopefully she can take the topomax and not feel too sleepy. If not keep trying different drugs. I also still do loose lots of hair I do take b12 as well and dont have much of an appetite on topomax or gabapentin
Angela

16

Thanks, Angela. She had one seizure only back in september, that is how we found the avm, but she did not have one since. But I guess they still want her on anti-seizure meds. :(

17

I was given topomax for headaches but it is a seizure medicine as well.

18

I've been on Topamax for almost 7 years now after being on Keppra. My biggest complaint is the lack of appetite and certain hate for the way food tastes, ie anything tomato based, just does not taste good. I don't know why, but pizza and pasta sauce is out!!

19

Thank you Diane , are you taking Topamax for seizure ? And how much are you taking if you don’t mind me asking ? I appreciate your input. Thanks again :slight_smile:

20

Sorry, I misspelled your name it’s not Diane , Danine :slight_smile: